Going Home Well, K has now been home for about two and a half days. It’s already been one wild ride. We’re trying to get her used to this environment, do all of her care, and learn her equipment inside and out. She has a condenser that makes oxygen for her as well as 4 or 5 travel tanks that will last up to 20 hours each, an apnea monitor that watches over her heart rate and breathing, a pulse oximeter that also watches over her heart rate and then her blood oxygen level, and a feeding pump for her G-tube should we need to use it (which we do quite a bit, so far).

So far she’s wearing all of this equipment 24/7 except the feeding pump, of course. There’s a little extension tube thing that goes between her and the tubing on the pump that I have to attach to her G-button. I don’t like to leave it attached, just to avoid the situation where she might pull on it and yank the button out. Her button though, I almost have to laugh each time I close it because it makes her look like a little swimming pool toy.

The nurse practitioner had said something about her only having to wear the oximeter for a 4 hour block during the day but we’ve had her wear it all the time so far. That one actually shows numbers so we can see her heart rate and what her oxygen content is. The apnea monitor only has indicator lights to show you it’s working and picking stuff up, but you can’t see what her actual heart rate is and it doesn’t say anything about oxygen. I’m not too worried about oxygen, though, they have her at a flow where she hardly ever has too little in her blood. Only if she pulls out her cannula for too long of a time or is just inconsolably screaming for a long time or something.

Speaking of inconsolably crying – that’s how we spent all last night from 2 am forward until about 2 pm She hardly slept at all during that time, too, and we couldn’t figure out what was wrong. Maybe she was hot, maybe she was just stressed because of her new surroundings (after all, think about where she spent the first 3 months of her life outside the womb), who knows. But any time we’d finally get her to sleep and put her in the pack n play, she’d be screaming 5 seconds later. And, of course, any time you take her temperature, change her diaper, wipe her down, change her leads, adjust any other equipment… it’s pure torture. That’s what they should do to terrorists they’ve caught, ’cause it’s apparently the end of the world to have your temperature taken… under your arm!

So, yes, because of her equipment, cord lengths, and such, she’s currently in the pack n play in the living room. She can go in the crib in E’s room, just as soon as we’re ready to make the transition. I kinda like her out here, though. It also depends on when I get tired of the couch, because I’m back here again, at least at night and when I need to be around her. The manuals say be within 10 seconds away from the infant. When it alarms, if it’s a real alarm, you gotta be there quickly. And if I were upstairs and her downstairs… I’d kill myself the first time I had to run down the steps. Steve’s off work, too, and he’s been staying down here with us. Eventually I can put her in the crib and take E’s bed and he can go upstairs with Steve for a while. Probably at least as long as K requires oxygen. Maybe? We’ll see. I don’t mind so much, finally got a box springs for his bed so it won’t be bad for a person of my size to lay on it.

Most of E’s toys are still in the living room. I have yet to go through them with him and organize them into the unsused drawers we have in their room. K has several drawers taken up with her clothes and blankets and oh, so many medical supplies (bags for the feeding pump, syringes of 5 thousand different sizes, spare cannulas, stickers for the side of her face, adhesive remover, sterile water, SimplyThick, spare leads and a belt, spare oxygen sensors, etc, etc, etc). We have a bunch of these, working out quite well, I think. We need more, too. Planning it right, we can get all their clothes and (not huge) toys in there and if the time comes and we’re still here when K is in a regular bed, get them some bunk beds to save room.

But anyway, here’s hoping for a quiet evening…